Happy Times on the Tilt Table

[LockShockBarrel]

Hey guys! So here's the update with me, since July, I've passed out 4 times, so I finally went to a Dr to get checked out and they sent me for a tilt table test. I had that today and was diagnosed with neurocardiogenic syncope. Essentially what's happening is if I stand upright and still for a period of time (not even a long one necessarily, but too long for me) I pass out. It's caused by an oversensitivity in the heart, so standing up and still, the blood is pulled down by gravity and the body raises the heartrate and blood pressure to keep the blood flowing to the brain, eventually the heartrate and blood pressure get too high and the body sends a signal to drop them both, and I faint because the blood flow is away from my brain. Once I lay down (pass out) and the blood comes back to my head, I'm fine, if not a little tired. They gave me a list of things to do to help, including drinking more, eating more salt, and doing movements like bending over and such to keep the blood flow moving and all that fun. I may be put on betablockers, in hopes that should I be standing up and still, that the pulse and pressure never get high enough to trigger this reaction.

So here's my question, one of the things they told me to avoid is standing in lines, so would I benefit from getting a GAC? We've used on in the past for my father who uses a service dog (and I know they're not supposed to be necessary in that case but we've still been asked for them) but I'm sure what exactly it would do in my case. I was reading the FAQs and the "stamina/endurance" thing, and I'm really fine walking around and such, it's just the standing still thing that would be my concern. I don't want to be in a long line and have this happen and bang my head on a guardrail or something like that. I don't have a trip coming up any time soon, but I'm working on one hopefully and I'd like be to able to figure this into my plans if I need to.

 

[SueM in MN]

The problem with a GAC is that in many attractions, you will still be in one place for a while - GAC or no GAC. There is a thread linked in post #3 of the disABILITIES FAQs thread that lists some of the attractions where that happens. (It's titled something like "Attractions with no place to sit"). A lot of them are shows where you will end up standing for at least the duration of one show.

For some (like Hall of Presidents and American Adventure), you will be able to move around in the waiting area as long as you are not in the pack right by the entrance doors. Both of those have some benches, but in busy times, those are likely to be filled. There are 10 benches in the Hall of Presidents waiting area and each holds 2-4 people.
For others, like Laugh Floor and, especially, Little Mermaid, they pack lots of people into the waiting area and, even staying back from the door, you will not have place to move around.

 

[KPeveler]

Would a rollator help? They are lightweight, you can stick your bags on them, and then just sit in the lines when you need a break? I used to do that before my condition progressed... I also have POTS (or something like it, still undiagnosed) so I too understand the need to not stand in line all day...

Bringing a place to sit with you may be the best thing. There are even rollators that convert to transport chairs (all small wheels), so people can help you get through the line... Just a thought!

 

[Wee Annie]

Had to reply when I saw "tilt table" in the subject heading! Ah, such fond memories...(not! The cardiologist said she had never seen someone "fail" this test quicker -- I made a record!).

I was diagnosed with your exact condition about 15 years ago, except they called it neurally-mediated hypotension back then. But it sounds like it was the exact same thing (had been fainting when forced to stand still on my feet since childhood).

Aside from increasing salt intake, the cardiologist also told me to make sure to shift weight/move around a lot instead of just standing still. I was also placed on beta-blockers (because I was having the unfortunate experience of passing out on crowded NYC subways or while working on my feet in courtrooms...), and they really really did the trick. Never experienced any problems while on them.

Good luck. The issue (as you know) is standing still -- stock still -- for longer periods of time. So any GAC you request would have to ask to the ability to sit when you feel faint (but you might not really feel like riding anything then anyways).

Btw, I "outgrew" my condition (which my cardiologist said was common when people have this starting in childhood). Once I developed hypertension during my second pregnancy, I never had this problem again (now just have hypertension!).

Good luck!

Ann

 

[LockShockBarrel]

Thanks for the quick replies guys! Just like Wee Annie said, its the standing completely still thing that's the issue. If I stand now, I shift my weight back and forth, cross and uncross my arms, stuff like that. My main worry would be being packed into something where if I had to move around a little, I'd be bumping into people. I don't think explaining "Sorry I bumped into you sir, but if I don't move around a little, I'd turn into a puddle of humanity at your feet" would cut it. I'm also thinking that if I were to go ahead of the rest of my party in line, they maybe they could kind of block/resist people pushing from behind so that I have just that little bit of room, and I'd have more than an inch of personal space around me. Does that make sense?

Maybe Wee Annie can answer this for me...another part of my concern is the heat, because they're telling me the heat can make you more sensitive to this happening. I'm a bit concerned that even if I had the room to move a bit that the heat almost cancel out my trying to keep my blood moving.

This is all very new to me, and stuff that I've never had to think about or anything that's ever effected me before, so I'm probably sounding panicky and over concerned, but what can I say, I don't want to wake up in queue to It's Tough to be a Bug with a family from St Louis taking pictures and saying "Oooh look at the fainting girl!"

 

[LockShockBarrel]

Sorry for the double post, but I forgot to say also to Wee Annie, I went out 10 minutes into the standing portion. It was like "Boy it's hot in here...why's my heart beating so fast...hey I feel dizzy...................................." and then I woke up once she had lowered the table. I guess under strict textbook guidelines, it wasn't a positive test, but in my case it was because my heartrate shot up to 147, then dropped to 90 and my blood pressure bottomed right out, and obviously I passed out, so they called it positive.

 

[Wee Annie]

I think you hit the nail on the head re your concerns re being packed into somewhere. Your average slowly (even VERY slowly) moving queue would probably allow you ample ability to shift weight, move back and forth a couple of steps, etc. I think the real problem comes into play in places where you would be expected to pack into, say, a pre-show room that could very possibility be overheated (and yes, it is SO much worse when it is hot. Try to drink plenty of cold water).

For example, the first time this ever became an issue for me was when I was a young elementary school student. When we had fire drills, we were expected to pack into the lobby of the building (hey, it was NYC -- not a lot of places to go outside...) and stand, packed in like sardines, perfectly still for what seemed like a LONG time. Needless to say I would often faint, so much so, that I was made to stand next to the teacher so that she could catch me and take me to the nurse....

So yes, in thinking about the possibility of a GAC and what type of accommodations you would need, think along those lines. If you could somehow sit in those circumstances.... Even on the floor, perhaps against a wall with people from your party around you? Once you start feeling faint it's too late. You need to prevent that from happening.

As for my tilt test (which was EONS ago), I recall the cardiologist immediately calling my internist (who is also a cardiologist) and said, "yes, she failed, didn't even make it five minutes. I turned around to look at something and bam, she was out...." I felt sick the rest of the day.

Oh, that's impt -- the dr said that, after one of these episodes, it is not uncommon to feel really weak and sick for the remainder of the day. She told me the medical reason why that was, but I forget.... So do think about how to prevent this whole chain of events in your body from happening.

And, if it happens with some frequency, consider beta blockers. They worked wonders for me.

 

[LockShockBarrel]

I'm hoping to avoid any type of frequency, already drastically upped my salt and water intake. I haven't heard back from my regular doctor yet, but the nurse and dr that did the test said I'd be a good candidate for the betablockers.

And you're right about the tired icky feeling afterwards. I get really tired after it happens, and just a general off feeling, and I would hate to go to the World and have this happen and have to take time out to rest or go back to the hotel. Obviously if I have to, I will, I'd just rather try to avoid the whole thing. I try to go in the off season, so I'm hoping that I won't encounter any of the super packed preshow rooms, but maybe if I explained my issue they'd let me stand outside the preshow room and then let me in when the show started?

 

[gidpamit]

Great info! Really informative. It is helpful for me.

 

[OneLittleSpark]

I think getting the rest of your party to act as a 'buffer' is a good idea. This would be particularly useful for things like Soarin' and the Safari at AK, where the lines are wide and often packed in tightly.

You might also benefit from getting a GAC allowing you to board wherever the wheelchair users do. With a lot of the shows and preshows, there is a separate line or area for wheelchair users. For instance, in Monsters' Inc it's down the right-hand side of the preshow waiting area; in HISTA it's a separate 'box' (like a threatre box, not like a storage trunk! ) at the back; and in Country Bear, it's a roped-off section in the main waiting room.

If you used these where available, it would just give you that bit of extra room to shift about, without whacking anyone. Just remember when swinging your arms that those of us in wheelchairs have our faces lower than most other people (you'd be amazed how many people forget!)! If you do go down this route, you'd probably need to ask the CM at each attraction what the waiting area set-up was like, before you decided how best to handle it.

If you're not sure how you'll react in the heat, I would suggest having someone in your family ready to catch you in lines, just in case. You probably wouldn't need to do it the whole trip if you found you weren't having problems, just for the first day or so to 'test drive' your condition in the different climate. It doesn't have to be anything too obvious, perhaps just looping your arm through someone else's so they can stop you hitting your head if you do faint.

Also, if the trip's not booked yet, you might want to try and plan for a quieter and cooler time of year. November (not at Thanksgiving!!!) is supposed to be fairly quiet (and cheaper ), or early in the year would be good too. Not only will the cooler weather make it easier to control your condition, the lower crowds will make lines shorter, so hopefully less standing around and waiting.

Hope you have a great trip, whenever that may be!

 

[SueM in MN]

This is a picture showing the separated wheelchair waiting area for Monsters, Inc. Laugh Floor

The waiting area does not shorten the wait and not all attractions have them. In most cases, it's not a separate area until you actually get into the waiting/preshow area.
It's basically so that the CMs can bring wheelchair users or people with other special needs in separately from the main group. Most are fairly narrow, but many less people. What some people do outside of those lines is just stay to a wall and not move up when the CM instructs people to keep moving all the way to the front. If you plan to do that, it would be best to clue the CM into what you are doing and and a short explanation of why (*i.e., because of special medical needs, I require space to keep moving around).

 

[VillageMama]

I hope that you have a wonderful trip and that you feel strong and healthy all of the time.

My husband had a tilt table test after passing out rather dramatically (collapsing is a more accurate term!). He didn't tell me until months later that his heart stopped during the test.

When the doctor recommended a high fluid, high salt diet hubby told me, "Great! Beer and potato chips!".

 

[LockShockBarrel]

I completely forgot how the wheelchair stuff it roped off! We use those lines when I go with my father who has the guide dog and usually people are good about not packing it in in those areas. All good stuff to think about. Like I said, trying to work on getting a trip in the works, but I want to know as much as possible before I start trying to make plans. Right now Jan 2011 is my goal, and I believe that's a quieter time (at least before MLK) and obviously its cooler. I've been and like it in Oct, but Oct 2010 is too close and Oct 2011 is too far.

 

[SueM in MN]

Right now Jan 2011 is my goal, and I believe that's a quieter time (at least before MLK) and obviously its cooler. I've been and like it in Oct, but Oct 2010 is too close and Oct 2011 is too far.

January (except around MLK) is traditionally a quiet time.
I think for you, Tour guide Mike may be very helpful too. Even in busy times, like Spring break (VERY BUSY), there are times when attractions that were long waits are basically walk right on. If you knew when those times were, it would be very helpful to you.

 

[LockShockBarrel]

I've been thinking about trying Tour Guide Mike anyway, but I'm glad you said that because I definitely will now.

 

[LockShockBarrel]

So I just wanted to update you guys again, and shameless bump my post back up. I emailed Disney guest services with my problem to see what they'd say, if they'd suggest a wheelchair like the FAQ's says under stamina problems or if they'd suggest the GAC. I just got the email so I figured I'd post it for you all. It's pretty much what we all know anyway, but here you go!



Dear Alyssa,

Thank you for contacting the Walt Disney World Resort.

We are pleased that you and your family will be vacationing with us and
we appreciate your desire to make your visit as comfortable and
enjoyable as possible.

The Guest Assistance Card is a tool provided at all four WALT DISNEY
WORLD Resort Theme Parks to enhance the service we provide to our Guests
with disabilities. It was designed to alert our Cast about those Guests
who may need additional assistance. The intent of these cards is to
keep Guests from having to explain their service needs each time they
visit an attraction.

The Guest Assistance Card is available to our Guests with non-apparent,
special assistance needs (i.e., autism, heart condition, etc.).
Depending on a Guest's need, this card may provide a variety of
assistance such as allowing Guests to wait in a shaded area, or
providing admission to our attractions through auxiliary entrances,
where applicable. However, the intention of this card has never been to
bypass attraction wait times, or to be used by Guests with a noticeable
service need.

Guests with an apparent mobility concern, such as Guests using
wheelchairs, canes, crutches, etc., or Guests with service animals, do
NOT need a Guest Assistance Card. These Guests should be directed to
follow the attraction entrance procedures for guests using wheelchairs,
as outlined in the Guidebook for Guests with Disabilities.

A Guest with a specific need for assistance can request a Guest
Assistance Card at any Theme Park Guest Relations location. To
accommodate the individual needs of our Guests, we ask that all Guests
discuss their assistance requests with a Guest Relations cast member
prior to the card being issued. The Guest Relations Cast Member will
discuss the available service options with the Guest and provide written
instructions for our cast on the Guest Assistance Card. The Guest will
be directed to present the Guest Assistance Card to the Greeter or first
available Cast Member at the attraction and await further directions for
their experience.

If you have questions or need further assistance, feel free to contact
us.

Please include your full name, E-Mail address, and reservation number if
applicable on all correspondence.

Sincerely,

Paul Koburi

WDW Online Communications

PLEASE NOTE: All information is subject to change without notice and
should be confirmed just prior to your visit.

 

[SueM in MN]

Thanks for posting - yes pretty much what is in the disABILITIES FAQs part about GACs.

Also, the information suggesting a wheelchair or ECV for fatigue or stamina concerns comes right from the WDW website.